Julia's Journey with Metopic Cranio Synostosis

Thursday, November 20, 2014

OK, way overdue but wanted to update for my fellow cranio moms checking up on us or anyone who finds this in the future. We had Julia's one year post-op apt back in June and it went well. Julia managed by some miracle to hold still for the necessary 60 seconds to do the CT scan. Not sure who was more surprised, AJ & I or the anesthesiologist they had on call and said that this NEVER happens with one year olds. So what could have taken more than an hour (like last time) took...three minutes. So, we went down to the cafeteria to wait the 1 hour 45 minutes until the apt with the surgeon to review the CT scan. Pretty uneventful appointment as he looked at the films and felt her head and said things seem to be healing as expected. He said the largest hole was two inches long and maybe half an inch wide. She will continue to have annual appointments but her next CT scan wouldn't be for a few years as they try to minimize how many a child is exposed to.

A photo from that day with the statues outside the hospital

A few of her two year photos from September ~ chosen to show off her smooth forehead :) Isn't she a cutie-pie?

I'll try to update as we have appointments but luckily cranio isn't a part of our everyday lives so I just don't think about it too often. Which is a good thing as far as we're concerned.

Monday, July 29, 2013

I've gone back and forth about whether I really want to post something so personal on a blog a lot of my friends and family read. But in the end I decided I wanted to share because I think it's important. We reached a milestone this last week with Julia. The six figure milestone...as in her medical bills have now exceed $100,000. Over 80% of that was from the five days she was in the hospital last month. I'm not even sure we've received them all yet as another came in last week which pushed us over the six figure threshold. And this is for honestly a fairly standard procedure with no lifelong residual therapies needed. Not that we thought of it as routine but as I said, Children's Hospital reminds you that what is something your friends and family have never heard of is something they battle every day or week. Which is comforting that it's so familiar to the surgeons and nurses but terrifying in that so many family's are going through it as well as things much scarier.

I want to stress that not only are both kids happy and healthy (which is most important) but that we have wonderful medical insurance as well as an emergency savings to handle this and are in no way in any financial trouble. But it makes me shudder at what would happen if we didn't. If we like most Americans lived with too high debt and were one emergency away from bankruptcy. Or if we didn't have medical coverage with a reasonable out of pocket maximum through work. I talked with a coworker a few weeks back who told me that our story with both Jonah and Julia as well as a friend of hers who had a high medical needs child made her realize how differently she had to think about planning for getting pregnant. And that's sad because planning to start a family should be blissfully happy not stress inducing. But better a little pre-planning than catastrophic stress later. So I decided to share. Julia is at $106K and counting, Jonah I never really calculated but a decent estimate would be about a quarter million with 95% of that occurring during his first two months of life and luckily very little over the last 3.5 years. I can honestly say that in both cases I considered the costs so I could adequately budget for them, but that I didn't have to base my decision on what was the best course of treatment for them on what we could afford. And we shouldn't have to, having your child have surgery is quite stressful enough I assure you.

I don't want to get into all the political arguments surrounding cost of care and insurance, that's not really my style and many people wiser than me have expressed all sides of that debate. Rather I want to encourage everyone to plan for the unexpected in their own lives, be it medical or otherwise by getting your finances as healthy as possible to weather whatever storm it is that will hit throughout your lifetime.

Julia says hello and she wants to end on a happy note, mom is so serious...

Monday, July 15, 2013

Thought I'd provide an update on Julia, she's now 6 weeks post-op which is a milestone in that the first six weeks are the most crucial in terms of her skull pieces knitting together and becoming sturdy. Julia started at daycare the beginning of last week and has readjusted pretty well, too much to look at instead of napping, but that's to be expected.

A few posts back I showed her first week in photos, I thought I'd dig up a few more to show the changes over the last month. Here is Julia 2 weeks pre-surgery and two-weeks post surgery, you can see how the overall shape of her head has changed quite a bit and the ridge on her forehead has been smoothed out.

Julia four weeks post-op at the fourth of July parade and cookout.

Five weeks post op this last weekend, just because I can't believe how you can't even really notice her incision in this lighting. Her hair has started to come in; though with how light and fine it is it'll probably be a while before it truly hides anything.

Sunday, June 23, 2013

We had our post-op appointment with Dr. Jensen at the end of last week and he says she looks great! He's very happy with how the incision is healing and with the aesthetics of how her head is shaped. He said there's still quite a bit of swelling but by the time he sees us again in 3 months that should be mostly gone. He said to expect her head to be lumpy-bumpy, even more pronounced as the swelling goes away, which will remain for months or even a year or two. He said the stitches will fall out on their own and we have no restrictions in terms of bathing her. He took a few photos of Julia and was nice enough to pose for one of our own for her scrapbook. He reminded us that we had his beeper number and we could call day or night if she bumped her head or we had questions. But he expected all would be fine. He answered the few questions I had and said he'd see us in 3 months for a regular checkup, another CT scan at the one year mark and then annually after that. Whew!!!

She's nearly back to her regular night time schedule too, occasionally wakes
up 1-2x per night and self-soothes or we replace her pacifier. Other
than that she's asleep from 8pm to about 6am and will head back to bed
after eating if it's a weekend for another hour or two. She'll be out of daycare for another 2-3 weeks and then back to normal routine. I brought her with me to drop off big brother this week and everyone was amazed at how great she looks considering all she's been through (or, at least that's what they tell me :)

Saturday, June 15, 2013

Well, since updating the blog was an utter fail during our time in the hospital, I thought I'd recap now. That way we'll remember what happened when (as I know timelines get fuzzy with age) and it'll help future Cranio moms to know what to expect (big thanks to those that came before, it really helped ease my mind!).

So, my last post was last Wednesday. Thursday we both worked and the kids both went to their in-home daycare for the last time. Big thanks to her for keeping the kids healthy for the entire 5 weeks, unbelievably she emailed to let me know both her and her son came down with a high fever the very next day!!! We packed up the car and headed out of town immediately after work, picking the kids up along the way. We dropped Jonah and the dog off at grandma and grandpa's house and had dinner with them. Then it was up to the Ronald McDonald House as they had called earlier that afternoon saying they had a room available. For those that have (thankfully) never needed to stay there, you never know until the day of whether there's a vacancy, but luckily once you're in you're welcome to stay the whole hospitalization. RMH in Milwaukee has been operating over full capacity for several years and just broke ground on a project to double the size of their facility. It's a wonderful place to stay and even donating more than a hotel would cost us we still felt it was the perfect place to be, the volunteers are wonderful, they're right across the street from the hospital, they offer meals-to-go and refrigerator/laundry/etc for use while you're there and they have a clean playground that Jonah was able to come visit and play at one day.

After checking in we pretty much got all settled for the night and went to sleep. We knew it would be a big day and figured Julia wouldn't sleep as well away from her own room. She did great and other than me waking her up at 5:30am to feed her one last time she slept through the night until about 7am! More than I could have hoped for. We had to be to the hospital at 9:30am so we took turns getting ready and gave her a really good scrubbing (at the hospital's request) and headed over. We checked in at the hospital at 9:30 in pre-op and got all her vitals and hospital bands and changed into her hospital gown. And waited (as expected). I'm convinced they build in time in case you're late so they don't delay the operating room or surgeons.

They started almost exactly on time, coming to collect her around 11:15am and coming out to tell us they were done around 4:15pm. They provided two intermediary updates via phone call to the surgical waiting room letting us know all was going as expected. They did have to do a blood transfusion during surgery and another that night and another the next morning, a few more than planned. Once they were done we met them in the hallway for a quick kiss before being debriefed by the surgeon and waiting another hour for her to get settled into her room in the ICU. He explained that because of the shape of her head he had to take a slightly different approach but that she looked great and he foresaw no problems. There was a small tear in her dura (the leathery muscle that protects the brain) so they were going to be cautious over the next day and use lighter suction. Then we were given a ICU tour there and settled in. We ended up staying there only about 24 hours. AJ stayed overnight at the hospital in her room and I stayed across the street at the RMH. Every night we switched off so we weren't zombies. Between nurses taking vitals every 3 hours plus Julia not sleeping very well anyways, the person staying overnight got very little sleep some nights. But I'm so glad someone was with her literally 24 hours a day, it made me feel better even if she didn't notice early on (though I think she did).

The first morning post-op I rushed over to the hospital so I could be there for rounds. They said she was doing well but crit was a little low and she needed another transfusion. Overall they were happy with her progress and they were moving her out of the ICU that day. What?!? But it was true, they gave her what would be her final transfusion, took out the Foley catheter and monitored her that day and we moved to a regular hospital room about 24 hours after she got done with surgery. We moved to the smallest possible room on the 8th floor in the neurological wing. I seriously think it must have been because Julia was in a small crib rather than a full sized patient bed, you could NOT have fit one more thing in that room. The nurse apologized for the state of the room (falling apart) as they are moving to the newer wing of the hospital in "a year or two so my supervisor doesn't want to spend any money here". Um...K?!? But the nurses were great and the care was what mattered so we didn't grumble (loudly anyways :)

We stayed there from Saturday night through Tuesday morning. The day of transfer was rough as moving her caused her some discomfort and she was also starting to throw up from all the pain meds which were rough on her stomach since she hadn't eaten much yet. On Sunday morning they took out her drain tubes, which were tubes with bulbs on the end providing suction to extract blood and other fluids from under her scalp. Her swelling peaked that day and because she was more awake it bothered her more that she couldn't see out of her eyelids which had swelled shut. That same afternoon they took off her head wrap and told us that would help her swelling diminish and to hold her upright to help as well. Monday she started eating more regularly and could just barely peek out of a crack in her eyelid and Tuesday morning we were told we were headed home. Our wonderful surgeon stopped by every day even though it was the weekend and was by multiple times a day most days along with visits from his fellow and residents. He was very supportive and is who will follow Julia for years to come, starting with her post-op appointment next week.

I thought I'd share a few photos that show her days in the hospital.

Day one - Waiting in pre-opShe was her normal smiley self and charmed the nurses

Day One - After the Operation
(Her room in the PICU, huge and filled with natural light...and a lot of machinery)

Day Two - (Day After the Operation)

This was in the morning, they still had her sedated which was a blessing as the only time she woke up was to moan or cry. She shared a nurse with one other patient next door and had a relatively uneventful stay. She had a foley catheter, two IV's, two drains in her skull, an arterial line (for blood draws and transfusions), a blood pressure cuff, plus pulse-ox on her back and toe (to monitor her oxygen saturations in her kidneys and outer extremities). Needless to say, no holding this day. The second picture shows the, like, 70" screen they had showing her stats when you came into the room. Thought my geeky friends might find the charts as much fun as I did in terms of quick visuals (Children's probably has the same consultants recommending visual management as my company).

Day Three - Swelling at it's Peak

The first photo is from mid-morning when her drain tubes had been removed but her head dress was still on. Swelling went up-up-up this day and because she had been weaned off the sedative she was quite aware of it. The second photo shows the actual incision a few hours after they removed the head wrap. They shaved just the strip that they needed to and the zig-zag pattern is to help her hair cover the incision as it grows back in. The dot behind the zig zag is one of the drain holes.

Day Four - Peeking Out Through Tiny Slits

Day four we had lots of visitors which worked out as it was when she started to turn the corner in terms of coming back to herself. The change from morning to evening was remarkable. She was still on some pretty heavy duty narcotic pain medicine but if you timed it just right between sleepy from the meds and in pain from them wearing off, you could get some smiles and giggles out of her. She now only had one IV line in and towards the end of the day we could even disconnect that in between her antibiotics which took about 40 minutes out of every 6 hours. You can't see it in the photo below but she can actually just barely peak out of her swollen eyes and she was loving sitting up and playing some games. They wanted her upright to help reduce the swelling but until this point we had just been holding her.

Day Five - Headed HomeUnbelievably she was headed home on day five. We of course had to spend hours between discharge there and moving out and cleaning at the Ronald McDonald House. Then had to stop at the pharmacy for some heavy duty pain meds and an oral antibiotic. Couldn't coax a smile out of her in the carseat as we made our getaway but luckily she slept on the way home. Once we got home we continued all the same meds as in the hospital but she was much more herself, seeming to realize things were almost back to normal. She was a bit afraid of being touched and especially of trying to feed her anything but I found her favorite food and let her make a mess for lunch which cheered her up.

Day Seven - One Week LaterMiss Julia is nearly back to herself. This was yesterday playing outside with her brother in the backyard. She was having fun exploring the grass and playing with Jonah's hat. AJ went back to work this Thursday and Friday and will be watching Julia Monday and Tuesday when I return to work. She got her first bath on day six and we'll be returning for her post-op to see how everything is healing late next week.

Thank you to everyone for your thoughts, prayers and help throughout our ordeal! Julia is a champ!!!

Wednesday, June 5, 2013

Way too much to do tonight and not enough time to do it so I'll keep it short. We went in for pre-op today with anesthesia and they approved Julia for surgery. She is healthy enough and we're very glad to be moving forward. She had her blood drawn for the two units of blood that might be needed. And she didn't shed one SINGLE tear. Couldn't believe it, she just watched them fill four vials with not even a squeak. Facts are she smiled at the lady doing it.

Surgery starts at 11am but they want us up at Children's by 9:30am. That means we'll be leaving in about 36 hours! They expect the surgery to be done by 5pm so we won't know much until late in the day. Although the nurse provides updates hourly I don't anticipate it to be much more than whether things are going as expected or taking longer than anticipated. When everything is complete we'll get an update by the surgeon and then get to see her briefly before they take her up to the pediatric intensive care unit and will need some time to settle her in and hand off her care to that team. So I might not have much of an update until very late but will try to get one out by the time we head for bed. AJ and I will be taking turns staying with her overnight with the other hopefully staying close by at the Ronald McDonald House. Appreciate the prayers and support!

Tuesday, April 30, 2013

Received a letter in the mail today from Julia's cranio facial surgeon. Excerpt below...

This [surgery] had in fact been scheduled but she acquired a significant upper respiratory infection that prevented us from proceeding with surgery on April 15th; the associated risks for proceeding with her surgery were too great.

She has been rescheduled for June 7th, and we are hopeful she will have made a full recovery by then. [...] Our understanding is that Julia is clinically improving, but remains at risk for reinfection. It is particularly critical in her case that we are able to proceed with surgery, as long term outcomes are related to the age at the time of the procedure, and the window is closing in Julia's case. It is therefore important that she remains healthy, and that all measures to insure not only her health but those of the children she encounters are maintained with the highest possible standards.